International MPN News, Science & Opinion

CRT – David Boule

 

Dave Boule, PV Patient finds new life after retirement.

By Marina Sampanes Peed

When Dave Boule was diagnosed with Polycythemia Vera (PV) in 2006, he searched the internet for reliable sources to learn about the disease. He looked for studies and read the citations to discover from where the knowledge was emanating. He found many references to Johns Hopkins and Weill Cornell. Since Dave lived in Connecticut, he sought out Dr. Richard T. Silver at Weill Cornell for an expert consultation.

The following year, 2007, Dave attended the International Patient Symposium on MPN organized by the Cancer Research & Treatment Fund (CR&T) in New York City. There, he heard Bob Rosen, chairman of the MPN Research Foundation speak about the need for more research so a cure for these rare diseases can be developed. Dave was inspired.

Dave retired from Ernst & Young in 2008, where he had been managing partner of the New York and global tax practices. He planned to spend time improving his golf game and enjoying his grandchildren. Dave realized that to enjoy retirement, he must remain as healthy as possible. So he decided to focus his time supporting the patient-driven efforts to fund research. He approached Bob Rosen and asked to get involved with the MPN Research Foundation.

Before he knew it, Dave became an active board member of two foundations that raise money and invest in research for MPN. As you will read below, the organizations fill different niches in the field of MPN research. While it may seem to be a conflict of interest at first glance, Dave has the support and trust of the leadership of both organizations and he respects the duties of care to each.

Cancer Research & Treatment Fund (CR&T)

Photograph: Julie Libon

David Boule opens the CR&T bi-annual Patient Symposium. (Photographs: Julie Libon)

Founded by Dr. Richard Silver in 1948, CR&T raises money to fund clinical research for MPN and other blood cancers. Over the years, CR&T has funded $7.6 million to physician-scientists’ work to advance treatment of MPN, leukemia, lymphoma, and multiple myeloma. Over $1.5 million has gone to doctors for other cancer research. Recently, CR&T invested over $4 million to create the Richard T. Silver MPN Research Center at Weill Cornell Medical School. This 3 year start-up grant helps fund the Center’s scientific director, PhD researchers, other essential staff, and mice (research mice are surprisingly expensive). CR&T’s board is comprised largely of patients, friends, and colleagues of Dr. Silver who believe in and support his prolific work at Weill Cornell. Most of the money is raised through a large dinner event supported by Dr. Silver’s many grateful patients.

MPN Research Foundation (MPNRF)

Chicago businessman Robert Rosen established this organization in 1999 with Bob Pritzker and two other MPN patients to advocate for MPN patients.

David Boule with MPNRF's Bill Crowley.

David Boule with MPNRF’s Bill Crowley.

MPN Research Foundation funds competitive grants for basic science research around the world (including the US, Vienna, Austria, and France) – looking for a break-through that can be more fully explored. Over $10 million has been awarded for cutting-edge MPN research. MPNRF’s board of directors is comprised of people living across the United States, with a wide range of backgrounds and interests. It raises money from foundations, corporations, and individuals. MPNRF also has a Scientific Advisory Board, comprised of esteemed scientists, to provide rigorous peer review of the proposals to and grants funded by MPNRF.

In addition, the MPNRF maintains a commitment to educate and empower the growing MPN community including patients, family, physicians, and researchers.

When asked what he brings to these two critically important funders of MPN research, Dave said that his role is largely functional. With experience reading and understanding complex documents (he is a tax accountant by avocation) and financial policies, he can help strengthen some of the organizational process areas. Presently, Dave is the Treasurer of the MPN Research Foundation. He helped establish the investment committee for CR&T, budget review, and negotiated with Weill Cornell the creation of the Silver MPN Research Center. He likes his “behind the scenes” work to help promote research that could one day bring cures.

So much for retirement! Dave is encouraged by the ever accelerating pace of investment in MPN research. With new people entering the field, new discoveries, and now the possibilities with CRISPR-9, Dave is hopeful the research foundations will eventually achieve their missions.

In the meantime, he and his wife enjoy visits by their two children and four grandchildren to their place on Lake Winnipesaukee, New Hampshire. His advice to fellow MPN patients?

Educate yourself. Get the best information to interact with your provider in a way to maximize your chance for success.

Get the right care. Don’t be afraid to get a second, or third, opinion. Seek out the experts.

If you are able, support the research efforts focused on MPN. This is the only way we will get better treatments and find a cure.

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